Guiding a neurodivergent kid through grief (by breaking all the rules)

Alynda Wheat Savage and her husband Dave were never big rule followers. They brought that punk rock spirit to parenting their son, Jack, who is neurodivergent. So when Dave was diagnosed with glioblastoma, they threw out the rulebook to help Jack process and grieve in a way that worked for him. 

Alynda shares how they protected Jack through diagnosis, decline, and loss. Her story is sometimes funny, always unflinching, and full of heart.

• Watch: How one mom battled small town prejudice for her kids

• Read: Why kids grieve in unexpected ways

Alynda Wheat Savage: Dave and I were never rule followers. I can't tell you the consternation that was had because we had cupcakes at our wedding instead of a wedding cake. Oh my goodness.

Jessica Shaw: How dare you?

Alynda: How dare I!

Jessica: Alynda Wheat Savage has never cared much about social conventions. She's whip-smart and funny. She has a bit of a mischievous side and, for the time being at least, dyed blue hair. I met her years ago when we were working at the same publication.

(00:31) A "punk rock" partnership

Jessica: Can you just tell us how you met Dave?

Alynda: I met Dave at The Cat and the Fiddle, which is an erstwhile club in West Hollywood that no longer exists, sadly.

Jessica: Best Bloody Marys in Los Angeles.

Alynda: I remember our first date was because there were layoffs. And I sent him a note saying, "Hey dude, there were layoffs today. You need to buy me a drink." And we went to The Shack in Santa Monica where Dave would end up proposing two years later.

Jessica: Dave had a punk rock attitude. He was an artist, an animator, and painted murals all around their neighborhood. I actually have one of his prints hanging in my apartment. His work is playful and colorful, also sometimes irreverent and even a little gross in a fun way. And Dave passed his love of art onto their son, Jack.

They were absolute partners in crime, and they used to do art together. They produced a comic book that is in fact titled "Crime." It's about a thief who falls in love with a police officer, but he leaves him for sushi. You know, as one does.

(01:42) An "aggressive, incurable" diagnosis

Jessica: But then in 2025, the family got devastating news. Dave was diagnosed with glioblastoma, an aggressive, incurable form of brain cancer. Alynda and Dave were entering dark, uncharted territory, but there was one thing they knew, and that was that they were going to do everything in their power to support Jack, who was just 11 years old and neurodivergent. He has ADHD and anxiety.

The priority would be to help him navigate this scary and overwhelming new reality in whatever way made sense for him, and that meant once again flouting social norms that other people expected them and Jack to follow.

Alynda: So, yeah, running interference and being the block between people who would expect Jack to behave as a neurotypical child might and explaining to them, "None of the ways that you expect kids to be," quote, unquote, "when something sad is happening to them necessarily apply here. And if you're not going to listen the many times I try to explain this, then this is a break we're going to have to take."

(02:41) Prioritizing a neurodivergent son

Jessica: Alynda lost her husband and Jack lost his father this past April. The grief is still raw, but Alynda says she wants to share her story with other families out there who might be going through something similar in the hope that it might help them find their own way, even if it means breaking the rules. This is "Everyone Gets a Juice Box." I'm Jessica Shaw.

Alynda, I want to start by asking you about Jack. Tell me about your son, Jack.

Alynda: Oh my gosh, Jack is all the potential of either the greatest superhero or the world's greatest supervillain ever known. We're trying to manifest his powers for good. He is sparkly, he is funny as heck. He's a mini distillation of Dave and me and very much his own creature still.

Jessica: Dave was diagnosed with brain cancer last April, April 2025, is that right?

Alynda: Correct, with glioblastoma.

Jessica: When he got the diagnosis, what were the conversations that you and Dave had about how to explain this to Jack?

Alynda: You know, it was important to us that Jack always understand where we were in the journey, but in a way that wasn't going to just completely subsume him. I mean, there's no handling this well, for him or for us. There's no dealing with it perfectly.

So we knew we were going to screw this up. There's no way around it. But we wanted to screw it up in a way that at least he understood that we loved him, and we were going to be there to support whatever emotions he had and just work through all of this together, you know?

We're the team here and that the cancer itself had its own personality and its own agenda. And that one of the hardest things we were going to face is the fact that because Dad was going to change, that understanding how to separate Dave from behaviors or symptoms that the cancer was causing.

Jessica: Seeing a parent's personality change would be scary for any kid. But Alynda knew it would be especially hard for a kid like Jack, who has a heightened intensity reaction to feeling rejected or criticized, what's known as Rejection Sensitivity Dysphoria, or RSD. It's commonly associated with ADHD, so that was something they talked about a lot.

Alynda: I find that the best way to get through Jack being neurodivergent is to, A, overexplain and, B, do it through the lens of neurodivergence. For instance, toward the end, Dave got pretty fractious and frustrated because he had aphasia.

He could not speak clear sentences, sometimes he'd pick the wrong word or he would just say something that was just completely unintelligible, and he'd get really frustrated. And if you couldn't follow along with that, he'd get angry. Never anything scary, but just he wasn't the teddy bear that we'd all known. And that's really hard to parse when you're 11.

So I'll say to him, "You know, we've talked about rejection sensitivity, and that means that when Dad is, you know, getting upset because he can't be understood clearly, you might take that a little harder than other people might. You know, it might be more difficult for you to reconcile that this isn't really Dad, he's not really mad at me in particular."

"And when that happens, I need you to take a step, breathe, come find me if you need to, or say, 'I want to hang out with my friends,' or 'I want to go do some art,' step away. But I need you to know that that has absolutely nothing to do with the way Dad feels about you. It's just your brain processing what's happening in Dad's brain its own way."

Jessica: Do you feel like putting it in the context and using words that he knows about because, "Hey, this is how your brain works, and these are things that you feel," do you feel like that got through to him in a more profound way?

Alynda: I do. I mean, he's so precocious and his vocabulary is insane, so I know that when we talk about these terms and we break it down in terms of what's happening in his head and his body, that he gets that.

So that by the time things were really bad, he not only saw the progression and could handle that, we were so accustomed to having conversations around these subjects that he would readily come to me, talk to me, or if there were blow ups, I'd be able to step in and we'd come to some sort of repair pretty quickly.

(08:00) Running interference against "social norms"

Jessica: The second someone has a diagnosis, a bad diagnosis like a glioblastoma-esque diagnosis, it feels like--my father had a glioblastoma as well--and I just, it feels like people just emerge and they start saying, "Well, this is what you have to do and this is what you have to feel and here's what you're going to go through."

Alynda: Oh, I mean, there were family members who were aghast that he wasn't doing the things they thought he should be doing. You know, they would push him for affection, they would push him for information.

And I told them time and time again, "He doesn't owe you any of that. He doesn't owe you affection, he doesn't owe you information about his life or his school or any of that. No child does." The fact that they were pushing at all was a problem for me.

Because that meant that their priority was that he perform family for them at a time when they needed to be family for him. I actually had one rather deeply painful conversation with a close family member who said that they were very concerned because he was such a sad kid and difficult to be around and needed to be pushed out of his comfort zone.

First of all, if the kid isn't sad when his father's dying, something is wrong. And second, if there's anyone who deserves to live quite snugly in their comfort zone, it's a child whose father is dying.

Jessica: Did you find that you had to create distance, both to protect him and to protect yourself as a parent from having to pick up the pieces after he would hear something upsetting from them?

Alynda: Absolutely. I mean, there are multiple, sadly, multiple relationships now that are forever altered because of the way people behaved at the worst time of our lives.

If you had asked me two years ago, "Can you imagine a future where you're not speaking to so-and-so, or can you imagine a future where so-and-so isn't allowed around Jack for a while?" absolutely not. Like, I couldn't begin to think of anything that these people would have done.

But something about a life-changing diagnosis, particularly a terminal one, just, people revert back to their lizard brains.

Jessica: What was his reaction, I guess, when certain people were sort of had to be removed for a time in his life?

Alynda: Well, I will say it brought us closer because he could see, not just hear, that I was doubling down on the boundaries, on making sure that he was protected and safe, that his agency was respected, and I wasn't going to let anyone hurt him, not in those ways.

When a child who knows that the only way through a situation is the death of their parent and they still say, "I'm so tired, I'm so over this, I wish this was over," that's devastating, and it's huge. And it's one of those tricky emotions that I told him that he absolutely should not feel guilty about in any way, shape, or form, because there were times we were all going to feel that.

Jessica: Were there moments that you felt like he--or that he articulated to you--that he felt guilty about how he felt or that he was unsure of--

Alynda: No, he did, he did. Because it wasn't just one time of saying, "I'm so tired." There were times when he'd say, "I feel terrible about saying this, but Dad makes me sad sometimes." You absolutely should not feel terrible about saying that. Dad makes Dad sad sometimes. Dad makes me sad.

What's happening to Dad is so wildly unfair, so tragic, that it makes all of us sad, and we all hate that. And absolutely none of us should feel an ounce of guilt over it. What you're feeling is normal, what you're feeling is perfectly fine to express to me and to Dave, and we're just going to keep talking about it.

Jessica: I'm curious how you balance the--I mean, I imagine with anxiety and with ADHD that structure is helpful.

Alynda: Right.

Jessica: How did you sort of balance, "This is how my kid's brain responds well when his father is not dying," and "This is how my kid's brain is going to respond now in this circumstance?"

Alynda: We let school provide most of the structure, and at home it was just a matter of essentially narrating our lives. Like I would be even more on top of saying, like, "Okay, so this evening we're going to be going over so-and-so's house and this is what's going to happen."

Or, you know, "Tomorrow we're going here, we're doing this, we're doing that." I gave him a constant update on basically where he was on the board, you know, so that he knew what was coming. Because there were, you know, we had people in our house all the time.

Everyone wanted to say goodbye to Dave or be with Dave. I mean, he had a large group of friends. And that can be really, really hard on kids, especially neurodivergent kids having their space interrupted.

So when that happened, I would take him out. Or if they were doing something that was art-based, he would join. So we just made sure to have enough options for him that he felt like, "If I want to go along with this thing I can go along with it, if I want to step out I can step out."

And that included things like trips. We took a bucket list trip to Las Vegas and had a couple of things that we had to do on it. But I totally made it clear to them, if at any point this stops being fun, we bounce. We're here to have a good time. We don't get to have a long time, so we're going to have a good one.

(14:50) Hard conversations and "game-time decisions"

Jessica: Can you tell me a little bit, as much as you're comfortable, about those last days of Dave's life and how you parented in those days?

Alynda: That was one of those moments when you know that you are not going to get the balance right. There's just no way. Dave had a pretty severe seizure three weeks before he died and he went into the hospital. And at first he couldn't speak at all, and for a long time that was true.

And then as his speech slowly came back, he developed some disturbing behavioral symptoms, and I kept Jack away from him for a while. And I would tell Jack just enough, basically, to satisfy his curiosity about why he wasn't seeing Dad.

And then when he did see his father, I would make sure that it wasn't for particularly long periods of time so that whatever interaction they had could be meaningful, he could get something out of it, but that, you know, a child's energy wasn't disturbing to Dave and then Dave's sort of taciturn attitude wasn't depressing for Jack.

And I made it very clear to Jack, "We're in the final days, I think." You never exactly know with glio. You know, Dave rallied so many times. But when it became clear that we were in the final days, I had promised Jack that he could be there for as much of it as he wanted.

And on what turned out to be Dave's last day, I was all set to send the boy to school. And he looked up at me and he's like, "Mom, no. I want to see Dad. You promised me that when we got to the final days that I could decide, and I want to see Dad."

"You know what, kid? You're absolutely right. My bad, I was just going on autopilot. But yeah, you need to see your father. And thank you for advocating for yourself." Because like I said, Mom's head was not in the game.

So we did, we went to see his father, and we had a beautiful morning with Dave. And that afternoon when I dropped him and my aunt off at home and went back to see Dave by myself, that's when he let go.

Jessica: And Dave was in the hospital. That was a decision that you and Jack made together, right, that all three of us made together?

Alynda: If we didn't have a child, I would have given that man leave to die the way he wanted, because everyone has that right. But we have Jack, and that meant that Dave couldn't die at home. I didn't ever want Jack to look at a room of our house and think, "That's where Dad died," and fixate on it. Because that brain will fixate.

Jessica: Was that something that you knew about how his brain works, he's not going to be okay if Dave dies at home, or was that something that he articulated to you?

Alynda: No, it was definitely something that I knew. Let me take you back to when we first moved here. Jack was two. And there was a small kitchen table that the previous owners of the house had left.

And we decided it was just not functional so we'd get a bigger one. So Jack comes home from preschool and sees that there's a new table in the kitchen. He is not happy. He demands that we go around to every house in Seattle and find our table.

Okay, so the kid has certain attachments to his environment. Knowing that, how could we let him live in a house where his father left this earth? We just couldn't do it to him. And Dave and I talked about that together many times.

We made a lot of really hard decisions. "What if Jack doesn't want to see you at the end?" "Well, then he doesn't have to, I'll always be able to see him." "What if Jack decides that he wants to be there when you go?" "Well then, I'll let, you know, you and him make the game-time decision."

It's a lot of really hard, candid conversations you have to have as parents, especially parents of a neurodivergent kid, when you're hit with something like that. And God knows I wish Dave could have gone on his own terms, but he put fatherhood before himself.

(19:27) A "Mexican Luchador wrestler" pillow

Jessica: It's been over a month now since Dave passed. And what I'm curious what it's been like for you and Jack in this new reality?

Alynda: We're still figuring out what that means. You know, the house is quiet, it's too quiet. Like Dave used to have punk music blasting while he did art, and his presence was so huge.

I mean, we still feel it all over this house. This house is stuffed with his art. Our neighborhood is stuffed with his art. Walking around and seeing his murals like at the water department or the restaurant down the street or at the elementary school, like you just can't escape that man, and nor do we want to.

He had such a vibrant presence. So to see a house that's a little duller in color and a little quieter is a lot to get used to. But we're going to get there.

Jessica: I guess what has Jack been able to--I mean, it sounds like all along he's been able to really tell you how he feels and communicate with you about what he needs, what he feels, his questions, his inner thoughts. Has there been something about the way that he processes grief that has sort of opened things up for the way you process grief?

Alynda: I'm just finding that we're processing differently. I mean, I will be candid, he's doing way better than I am, which, thank God. If if one of us has to be doing okay, then it should be him.

But he's also a lot quieter about his grief. I'm a crier, you know, I will see a piece of mail addressed to Dave and burst into tears. But Jack is more internal and he will work that stuff out with art or--and I--I don't know about other neurodivergent parents. Does anybody else get the, the sort of bedtime breakdown?

Jessica: Uh-huh.

Alynda: Like where all of the big emotions come right at nine o'clock? Like, must we? And yes, apparently we must. But most of the time, this is a child who's cracking jokes and trying to do anything he can to sort of get me out of it. And he is, as much as I'm not trying to make my boy my rock, he is something of my rock. And he is the reason why I'm getting up in the morning.

Jessica: This story is both devastating and there's something life-affirming about it, if that makes any sense, in the way that you just you approach things, in the way that you approached being Dave's wife, in the way that you approached being you, Alynda, being your own human being even as so many people were needing you, and the way you approached parenting. There's something that just fills my heart about that even while I'm sitting here blubbering.

Alynda: Okay, I'm going to share with you something that not a ton of people know. The night Dave died, Jack and I were snuggling in bed, and our very good friend who came to the hospital shortly after he passed sort of struggled into our house carrying this massive thing and kind of burst through the door and said, "Hey, so before Dave died, he and his friend John and I were kind of working on this pillow."

"It is a nearly life-sized body pillow that looks like Dave as a Mexican Luchador wrestler." It is bigger around than he was. It takes up more of the bed than he ever did. I can't keep it in the bed. And it comes complete with a removable mask. It is the most ridiculous thing in the world, and we burst into tears.

And then my friend was like, "Oh my gosh, did I do the right thing? Should I not have brought this over?" It's like, "No, no, no, I need you to understand. This thing is massive, and it is creepy as fuck. It is perfect. It is so Dave." Because that man was ridiculous, but he loved us fiercely. And that's what he wanted for us the night he died, was to have something to hold that looked like him.

Jessica: Thank you, Alynda. Thank you for sharing the story. Thank you for being someone that I think a lot of parents will listen to and will hold this, you know, and it will help them.

Alynda: That's my hope. I mean, it's already a horrible situation. The fact that we have kids that society looks at and that don't perform the way other kids do just makes it all the harder. So whatever help you can get, grab it.

Jessica: I'm so grateful to Alynda for talking about Dave and Jack, especially while she's in these early raw days. I know her story and her singular Alyndan honesty will bring comfort to someone going through unfathomable loss. As she said, whatever help you can get, grab it. I hope grabbing this episode helped. See you next time.

Thanks for listening to "Everyone Gets a Juice Box." The show is hosted by me, Jessica Shaw. It's produced by Julie Subrin, and Anna Rothschild is our senior podcast producer. Video is produced by Max McKenzie and edited by Lance Johnson. Our associate director of content development is Calvin Kinney.

Briana Berry is our production director and Neil Drumming is our editorial director. If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to podcast@understood.org.

This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson. Understood is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, donate at understood.org/give.

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